Thursday, October 20, 2011

Richmond CFF Event, Speech Notes

Some of you asked what I spoke about in Virginia at the fabulous Gala – so here are my notes! It was a wonderful event and I was so thankful to meet so many families and care-providers, dedicated to CF.

“Starry Night in Italy”

CFF Event, Virginia, October 2011

by Mary ElizaBeth Peters

PIQUE: My thoughts are racing as I try to get ready for my last minute flight from Boston to Virginia. Flying to Virgnia – Hmm. I won’t have to pack too much, so my bag won’t be too heavy. I don’t need my nebulizer – or should I bring my nebulizer in case – in case . . . oh, that’s silly – well, let’s see if it fits. What kind of mask am I supposed to be wearing again? Dang, I should have gotten that flu shot. What if I get the flu? How many doses of meds should I take? One? Two? What if I get delayed? Maybe I’ll just take all the full bottles. But then again, what if lose them? Would I have to buy them again, out of pocket? How does that work, exactly? Okay – enough. I’ll take the regular amounts. I should do this, it will be alright. These were my thoughts this morning preparing to fly – but also the thoughts of most CF patients on a regular morning, on the way to work, or the grocery store, or to school. These are the usual questions that pop up when traveling in the unusual world of cystic fibrosis.

INTRO: I am so thrilled to be here with you this evening, celebrating the hard work you have put in to this year’s fight against Cystic Fibrosis. My name is Beth Peters, and I am also thrilled to tell you that I am a thirty one year old woman, who has lived with Cystic Fibrosis, both before and after the double lung transplant that I received on July twenty seventh, 2010. I am a theatre artist and educator in Boston, and have spent my years pursuing education, and providing education in the arts – my true passion. I was born in 1980, a time when the life expectancy for a child with CF was eight years old. Everyone in the country was reading Alex: The Life of a Child, and every person I met, even as a young kid, looked at me and my older sister with CF - differently. Growing up with a sister who also has Cystic Fibrosis, I learned a lot about my illness from a very young age. […] Raising two children with CF – like many of you do every day – was not easy for my parents – but they wanted me and my sister to feel empowered over this part of our health, instead of held back by it. They wanted us to know that our health was very much our responsibility – like brushing our teeth or laying out our clothes for school, taking our laundry to the basement – We had responsibilities in the house to make our own lives run more smoothly. Caring for CF was just another part of that.

As I grew older, the life expectancy of a child with CF increased. When I was born, CF kids were meant to live to age 8. When I was 8, they were meant to live to 15. When I was 15, I was part of a CF Support Group that was for adults. The group was called “The Chosen Few,” – meaning that we were the chosen few who made it to adulthood. Thing have changed substantially since then, but now – at age 31 – I am still chasing the demographic that tells me CF patients mostly pass away in their late 30’s. I have had a double-lung transplant, that’s true- but this does not guarantee my survival. Even after my transplant – and sometimes more-so since, I live with the knowledge that CF could eventually take me from this world too.

MY PASSION: As a drama teacher and theatre artist, it has been important to me to teach individuals to express their stories. Living with Cystic Fibrosis- as each of us do, whether as the patient, parent, spouse, sibling or health care provider. Each of us has a story to tell, a personal story, that is also a shared story. A silent story – that is also a celebrated one. A struggle, that is also a triumph. I believe that there are thousands of ways to tell your story. In the year before my transplant, I turned to writing a blog that I called “CysticGal” to share my narratives, my poems, my random thoughts and even a little healthy anger about the difficulty of my situation at that time - what it’s like to live, and almost die, of CF. One of the poems I wrote is about the feelings behind this “battle” :

AN INSPIRING POEM:

No Dragon Slayer

I am a dragon.

I fly through the sky though heavy with wings like steel, never tiring.

I land upon the sea perched on delicate feet, never sinking.

I plunge to the deepest depth below, never gasping.

I do not need to breathe like you.

I do not need to breathe.

I am a green white pink white purple white dragon.

I float in clouds and am invisible.

I climb among trees and am a giant.

I balance on the mountain top only to witness.

I do not need to rest like you.

I do not need to rest.

I am a mythical, imaginary, remembered and forgotten dragon.

I do not fly among you, but I would.

I may not fly forever, but I could.

I will not fly in silence, though I should.

I am not defeated by you.

I am not defeated.

I am a dragon.

I hope that poem, and the poems and stories inside of you, can remind you that you are a warrior against CF – but that doesn’t mean you can’t be fragile, or lonely, or lose sight, some days, of where your battle is headed. You are still a warrior, and you will not be defeated.

CONCLUSION One warrior among us who comes to mind this evening is Ms. Emily Schaller – who was initially slotted to speak to you. I would be remiss if I did not share with you that she is absent because she is in the hospital, fighting her personal battle with CF. Emily is the Founder of an organization called “Rock CF” – which I am pleased to support. Emily and I share the goal of increasing the quality of life for patients with CF. Each year, through support of the CF Foundation’s research initiatives, we are pleased to see new treatments and studies emerge. These initiatives will change the lives of patients. I am old enough to remember the years that some of our regularly used medications were first released – and what an impact they had on my, and my sister’s, every day life as young teenagers. Knowing that our efforts – and the efforts we are making this evening – will directly impact the life and lifestyle of young people with CF – affects us deeply. We know that every moment of effort, and every dollar raised, helps a specific person with CF, with a specific need.

One thing that “Rock CF” and the Cystic Fibrosis Foundation does, is get patients excited about exercise in all its different forms. Both Emily and I are crazy believers in the importance and benefits of exercise – for her, it’s serious cardio like running and biking. For me, it’s yoga, swimming, or dance. We have a shared goal that each patient will find his or her own stride and feel confident to try new forms of exercise. Emily’s dream is to out run, out ride and out rock CF!

On a more personal note, Emily is in the hospital right now – in a position that I'm all too familiar with – one I was in just a few years ago, and then earlier this month, and then just this morning. Emily is putting her health first, above her aspirations, her social life, her personal fleeting happiness. Emily is putting her health first SO THAT she can continue to fulfill her aspirations. Don’t we wish the she didn’t have to choose one, over the other? Her health, over her happiness? Emily deserves a life that is free from Cystic Fibrosis, and so do I, and so do you, or your spouse, or your child. We all deserve a life that is full without being clouded by our illness.

Thank you so much for inviting me into your community tonight, I hope you enjoy the Auction and have a good time tonight – you earned it!